Hello. This month has been a perfect example of why I cannot be trusted to complete any task that requires me to write something every single day about something specific. That is why the “write every day” advice from authors is bullshit in my realm.

The last week has been insanely crazy and busy, and by the time the girls go to bed, the last thing I want to do is think about anything. So instead I found myself binging the show The Bold Type on Freeform and pretty much giving up hope of being productive. Well, I watched the last episode last night and I have a deadline for a publication I write for, so it looks like productivity has to start later for me today.

Anyway, we’ve skipped a bunch of days, so let’s catch up.

Day Twelve: Movies/TV. I don’t watch a lot of movies, and I don’t watch a lot of TV on the regular, so this category is useless to me. NEXT!

Day Thirteen: Letter to my past self. I am actually going to do this for Day Thirty, so NEXT!

Day Fourteen: Flare essentials. For me, coping with a flare depends solely on where I am when the flare starts, how long it lasts, and what the level is. I typically keep IC friendly snacks on me to help me level out a flare, along with lots of water (La Croix is a big helper for me these days), Clary Sage essential oil, and Advil. I try to sit around if I can, which is so rare, but I try to really focus on the self care when these happen. It isn’t always possible, but I try.

Day Fifteen: Pain levels. Oh, those vary. They go from “Oh, that’s annoying.” to “OMG everything hurts, and I’m dying…” And, usually, it’s one or the other – mine seem to like to be on the extreme ends of the spectrum. Very little middle ground.

Day Sixteen: How long DX took. I kind of went over this before, and I know that my doctors knew I had this about a year and a half before anyone told me…lol. Nice, eh?

Day Seventeen: IC Myths. I am not up on the myths behind it, but I know a lot of people say, “Well you haven’t always had this pain, so you can just do what you did before,” and it’s like, no. I can’t. I have been in pain for a long time and didn’t have a name for it until about a year ago, so I can’t go back to how I was before. Everything is different now. Knowing the reason why I am in pain and how to help myself immediately means that nothing will be the same. I will never feel like I did before, and that’s okay. It’s a hard thing to come to terms with the idea that I won’t ever feel like “normal,” but normal changes for everyone all the time. And for me, living with this and its effects on my body and life is just going to be a part of my truth and journey from here on. I don’t know many myths, but I do know the truths that I have experienced. And I want to focus on what I know to be true, not what I want to try to prove wrong.

Day Eighteen: Quotes. As a writer and voracious reader, I am always writing down quotes and adding them to my inspo boards. I live for a well-placed and well-meaning quote. I think words are beautiful and using them in a beautiful way is art. And I love it.
My favorite quote is “It’s okay not to be okay.” And, it’s so true. It’s exhausting to pretend you’re okay just because someone does not understand your pain level. It’s hard to put on a smile every day when you don’t want to. So, I have to remember that it’s okay not to be okay. And that’s all I need to know.

Okay, so life took me some places last week, so I am going to be combining a few days here to catch up. Days nine through eleven deal with inspiration, distractions, and food.

It’s hard to pinpoint what inspires me as I find inspiration every day. When it comes to advocacy and keeping up a dialogue about IC, I find inspiration in the community of fellow folks who deal with it, and inspiration in being able to help others with their diagnoses, processes, and the like. I live my life as an open book for the most part, and I have not yet had an experience tell me that I ought to not. I enjoy sharing my story to give hope and a good laugh to others who find themselves dealing with this.

I am also going to be major cliche and say that I find inspiration in my daughters. If, heaven forbid, they end up with this disorder, I want them to know that they can come to me for any support and guidance they may need down the road. I want them to see that Mommy is a strong woman who can handle all of the things that are thrown at her, even if that means sometimes Mommy has to cry and breakdown. No one is 100% badass all the time! So, seeing them watching me go through the trials and everyday bullshit with this disorder gives me strength to keep going and doing what I do. After all, if Mommy ain’t happy, no one is happy! Haha.

Distractions are my favorite things to talk about. I find distractions every day as well. From music to books, spending time with my kids to writing, I try to find some sort of escape every day. When I am in a huge flare, headphones come on and I attempt to do what I need to do to minimize its strength. I find that keeping my mind busy (when is it not?) keeps me from being crushed under the weight of the pain. And, anything I can do to keep myself going is a winner in my book.

Food is something I still fight with every day. Like I said before, some days I eat all the right things and feel great. Others? I eat all the right things, and it doesn’t help. So, for me, food is a battle. I know certain things I cannot tolerate no matter what. And that list sometimes changes as time goes on. I can go from not being able to eat tomatoes to being able to eat them by the handful. Strawberries? No more. Blueberries? Pass me the bowl! Milk? No. Ice cream? Yes! It’s all a shell game, really, and every day is different. With something like this, you can’t count on anything being consistent, and that’s really the worst part of it all.

Thanks for sticking it out with me. I can’t wait to finish the month strong on my challenge and hopefully educate and inspire more folks!

In another effort to stop clogging the feeds with the things, I am going to combine days seven and eight – Treatment and Friendship.

Day Seven – Treatment. I am not in any specific treatment plan for my IC, as I have said before, but I do work on managing my diet as much as possible and also taking my vitamins and Advil. I am going to talk to my doctor next week about potentially starting on a tricyclic antidepressant that I have been researching that helps with chronic pain, but that conversation has yet to happen. I am very wary of medications, but it seems a lot of patients in my studies I have looked at really are helped by this, and it seems worth a try, at the very least. I have also considered pelvic floor therapy – something my doctor and I discussed last month – to try to help me with some of my issues in that area, so we will see. I know options are open and get wider open every time a new discovery is made, so I try to stay on the forefront of all of it…. which can be exhausting for sure.

Day Eight – Friendship. If I am being honest, my friends are the fucking best. My friends keep me afloat on the days I want to toss in the towel and bury myself in my blankets. In fact, many of them offer to come help build the blanket fort and stay with me, lol. I miss my friends, a lot, because life doesn’t allow us to spend the time together we’d like. But thanks to social media, I am in contact with them a lot of the time, and they offer support I have never known. They may not understand what I am going through directly, but they know me well enough to know when I need a kick in the ass or a pick me up. I am so grateful for the little village I have amassed, and I don’t know what I would do without them. And I am able to be knowledgeable and help them with bullshit because I have been through – and am going through – bullshit, so it works for everyone. And really, that’s all I want – to be able to help someone with my own experience and knowledge of things. I mean, it’s the least I could do, really. Build a bigger table, not a wall.

I know you think your friends are the best.
Sorry, you’re wrong … mine are 🙂

Due to unforeseen challenges from yesterday, I am combining days five and six today. So, here it goes.

Day Five: Something Happy. I try to remain upbeat most of the time, so I try to remain happy as much as possible. So, for me, I find something happy every single day. It isn’t always easy – it’s life in the political era of today after all – but I do. I have to! Life is too short to be miserable. Finding something to be happy about every single day is imperative to my well-being. And it keeps me going.

This video ALWAYS makes me smile, and I play it to make myself smile when I need a pick me up. It just makes me happy…

Day Six: Meds. As I talked about briefly the other day, I do take some medicines sort of for IC, but none of them are prescriptions or the like. I take a fistful of vitamins, iron, probiotics, coconut oil, and Advil. I have some samples of Prelief, which is a drug that helps eradicate acid in food, but I have not tried it. I know that other medicines exist that I could get prescriptions for pain killers and the like. But, I have the type of system that cannot tolerate Benadryl let alone prescription drugs. If you’ve seen the videos of the girls after anesthesia, where they talk all crazy and shit, that’s me on, like, hydrocodone. I took one Oxy after my hysterectomy, and I laid in bed and felt my blood running through my body. I took the bottle to the Fire Dept the next day and that was that. No more. So, I am hesitant to try medications. I do a lot of essential oil things for every day life, and I know a lot of them are good for bladder-y things as well.

Well, I can honestly say that my cystoscopy experiences have not been as traumatic or painful as some others. I wasn’t aware I was having them, as I explained yesterday. Mine became part of both my hysterectomy and my sacrocolpopexy, so I wasn’t aware of what would happen. And though they can be performed under anesthesia anyway, usually recovery from them is painful. For me, it was all rolled into the pain of recovery, so for me, I was like “Everything hurts and I’m dying” anyway.

A cystoscopy is the main method that doctors use to diagnose interstitial cystitis. In a cystoscopy, a patient has her/his bladder investigated from the inside with a camera. There are different types of cystoscopy procedures, depending on what a patient needs. Sometimes, this procedure can be used to reduce symptoms or send IC into remission. I have yet to experience any of those benefits.

Obviously, it is very invasive. And in many ways, it is not necessary for pain relief, as many find their symptoms get worse after or see no real benefit either way. Many people rely on them, though, and that serves as another example of how mysterious and hard to pin down IC is – what works for one will not always work for another.

Myself, I don’t see jumping into a chair and having this done in my near or distant future However, I do understand that it is an available treatment option for pain. More on treatments to come… Stick around for the rest of IC Awareness month!

I couldn’t find a photo for this one that didn’t make me mouth-puke, so here’s a kitten.

When it comes to facts about the IC, there aren’t a lot of them that are set in stone. The disorder itself is a big old mystery, and information and facts change as research is done. Luckily for us who have it, research is constantly done and advances are made all the time.

I could sit here and give you a ton of websites that will tell you a lot of the same things, over and over again. Trust me, I am an over-researcher and obsessive compulsive about things, so I make sure I know everything I can about something I am interested. This fares well for bands I like and music I am into, but when it comes to medical conditions that not much is known about, it can be like running my head into a brick wall.

So, I will tell you what I personally know about IC after living with it. First of all, IC symptoms are different from person to person and even in the same person from hour to hour. You can eat the right thing that isn’t supposed to hurt you once and it will be fine, and then the next time it will be like molten lava in your guts. You can do an activity you love – like swimming or running – one day and be fine, and the next it can cause a flare up with rage and bloating like you have never seen. And regular life where you never have to worry about what you do or eat or wear… yeah. Good luck with that.

But, there are good things I know about it. I have always been very in tune with my body and its changes as I have gone through life. I can report that with IC, I am even MORE so in tune. I notice everything that changes as it changes. I know what I can eat (mostly) and what I can’t (mostly, but it varies) to make sure I am going to feel the least shitty I can. I know what to do when I have a flare up (again, mostly, as this also varies) to minimize damage (like the one I am in the middle of now… for example). I know that stress and heat can flare me up, so I try to remain cool and chill and positive as much of the time as possible. It isn’t easy, but it’s necessary. And, I know I am not alone – this affects millions around the world.

I understand the inner workings of my body now more than ever. Even though the disorder can present itself in different ways, I now know what it feels like when I flare or overdo it or eat something I ought not to have. I have an app on my phone that lists foods in categories of “try it,” “eat it,” and “don’t touch it” (paraphrasing here, but you get it). I know I can’t have beer, but I can have wine and hard cider/seltzer as well as most liquors, and that makes me happy. Cuz, let’s be honest, when you’re dealing with something like this, sometimes you just need a drink. Ya know?

The fact is that IC is annoying, painful, debilitating at times, and a lot of the time it is very unpredictable. It isn’t fun and nothing I’d wish on anyone. Another fact is that I am glad that if it was going to happen to anyone in my inner circle that it is happening to me because I use my voice and my life as an example for others to learn from, laugh with (or at), and I keep my spirits up as much as I can – even when all I want to do is crawl into bed and let the world run along without me for a while.

I also know that there are treatments available to me that range from stricter diet maintenance to medical marijuana and lots of things in between. And knowing that the research keeps changing and updating and that there may be a cure at some point before I die gives me hope. And what’s life without a little hope every now and then?

Keep on this journey with me tomorrow, and the rest of the month, to learn and laugh along with me and this crazy adventure that has become my IC Life.

This is a screenshot of the app I use. It has become my IC bible when it comes to what is safe and what is not. It updates all the time, also, so as more research is done, I know right away. It really does make a huge difference, and I don’t know what I would do (or eat/drink) without it.

So, today is all about the diagnosis. And I can say that my diagnosis was one of the easier ones from what I hear from other IC folks.

In 2015, I had to have a hysterectomy due to uterine prolapse. As it turns out, my doctor marked on my chart that he had done a cystoscopy (one of the tests most commonly used to dx IC) during this procedure, but oddly, that wasn’t communicated to me post-op. All I knew was that during my recovery, I was MISERABLE, and what I didn’t know was that it wasn’t normal post-op misery. My bladder was the problem. But, within months of recovery, I started dealing with a slew of issues from the hysterectomy that were unforeseen, so my bladder pain was kind of lumped into all of that mess, and it became one big ball of pain and complication constantly, day in and out for months…

Fast forward 14 months from that surgery, another specialist and rounds of tests with that specialist, and I was having another one to fix the issues from the hysto. My new specialist (a urogynocologist) had to install mesh to hold up my bladder, rectum, and vaginal vault – all of which were also prolapsing (my body is a dumpster fire). And, my recovery for THAT was doubly awful and tender, and as it turns out, the doctor for that one ALSO did a cystoscopy. However, he did tell me this, but I was so in and out of it on pain killers the day of and after my operation that the word “cystoscopy” never really registered with me. However, when I went in for my post-op and told him that my abdomen was super tender whenever I touched it and that some foods and activities had been making miserable for about the last year alongside the tenderness, he told me that I had IC. He had noticed it when he was in there for the operation, and he reminded me that he’d mentioned it to me in the hospital. I had to remind him I was so drugged up that I was lucky I remembered my name. We had a good laugh, and he got me on the right path to understanding this disorder and what it means.

He gave me papers on it and a brief overview, alongside treatment options and his recommendations (which I will cover in a post later on). But, I left that office feeling lighter just because I had an answer. He told me not to Google it because what I would see could be scary, but I don’t listen, and Googling did occur. Often. And instead of finding it scary, I was fascinated. So many stories existed out there of people dealing with what I had been dealing with and had no answer. I had felt like I was crazy, or that it was normal healing, but to know that what I was going through had a name made me feel like I wasn’t alone after all.

Now, that’s not to say it was a relief all around. To be diagnosed with a chronic disorder that is a medical mystery and masks itself as other things often was not exactly what I would call comforting – especially at my age. But, as I read site after site, and story after story, I started feeling less fear and apprehension and more comfort in knowing that I wasn’t alone – I wasn’t crazy (or crazier than usual). And for anyone who has dealt with something like this, knowing you aren’t alone is more than half the battle.

This is not a photo of my bladder, but I have seen photos of mine, and this is not a far cry from what it can look like. It’s ugly and burning and nasty… and it’s all a part of the joy of IC. Come back tomorrow for more on my month-long IC awareness journey…

It has been brought to my attention that September is Interstitial Cystitis (IC) Awareness Month. And, as it is my first September since being officially diagnosed (but not my first September with it, for sure), I am going to be partaking in what is labeled across social media as the IC Awareness Photo Challenge here in my blog alongside words. Cuz I like words. Words are my bag. Photos speak volumes, but words speak louder. And words can help you understand. If I just posted a photo, what the hell would that do? “Oh, look, Devon has a handful of pills…wonder what that’s about?” See, you need words.

Each day this month, I am going to post a photo and write a little something about IC and how I live my life with it. I hope to educate you about IC and show you a little glimpse into everyday life. I am an open book, so feel free to ask me any questions as the days pass, and I will try to answer them to the best of my abilities. 🙂 This’ll be fun!!

Day One’s challenge topic is “IC and Me.” I don’t want to show all my cards on day one and totally blow the month topic-wise, so I will keep this brief.

IC has been one of the most challenging things I have ever dealt with – and will continue to deal with every day for the rest of my life or until there is a cure. IC was something I didn’t even know someone could get until I was diagnosed, but I knew I had something going on even before I heard the doctor say it. Living with it provides me with ample opportunities to overcoming challenges, from bloating so bad I look quite pregnant to various levels of pain, sexual dysfunction to feeling mentally dispirited, overwhelmed, and exhausted. And it is exhausting. Oh, friends, so exhausting.

Some days, I feel like a thousand bucks (I can’t say million cuz it’s been a while), and other days, I understand why people take their own lives over this disorder. When I am in a flare up for days on end with no end in sight, debilitating pain threatens my very sanity. When I have control over my symptoms (even briefly), I get those glimpses of how I felt before all of this. And in those moments I have hope that they’ll last. They never do. Not even for a little bit.

IC and Me is exactly what I hope to encapsulate for the next thirty days. So, stick around. Join me in this journey. I look forward to walking with you…

Day One: IC and Me – the supplements (and Advil) I currently take to help ease pain, bloating, and other symptoms of Interstitial Cystitis every morning with my breakfast. Can’t take a multi – they contain triggers. What’s a trigger?
We’ll get to that this month!
Stick around.

I have done the whole “I Will Blog EveryDay No Matter What” thing before, and I am going to do it again! This time, as part of NaBloPoMo. Thanks to Jennifer Knepper (yes, THE JENNIFER KNEPPER, blogger queen and all around amazing wonderwoman of http://www.jennepper.com fame), I was able to click the link and join the masses doing this project.

Who knows what I will come up with. Part good stuff, part boring, and part entertaining are the only components I can promise you.